annanotbob2's Diaryland Diary



Well, it's all very shit, but this video has actually gone and uplifted me so I share it with you in case you could do with a touch of joy. Five minutes. See you on the other side.

Can't beat a bit of Ludwig Van - well that bit at least.

So. After all that, she's going to have to go into residential care, my daughter. Wheels have been turning behind my back - well, maybe that's an overly emotive phrase - without my awareness, let's say. When it appeared there was no suitable hoist, the MS Nurse started applying for funding and kept going even when a hoist was found. (I should say that the MS Nurse works out of an office in the neurology ward of the local hospital, has specialised in neurological shit and works with/for all the local MSers liaising with/representing them with whatever other services as required to enable them to live the best quality of life with a degenerative disease. Free, of course. So therefore not entirely at one's beck and call, but I hate to imagine where we'd be without her.)

This one has known ED for eleven years now, from the time when she was able to be in absolute denial about even having MS in between relapses, so full was her remittance to good health. And she's lovely, my girl. She's interested in everything, everyone, she's funny - ach, she's my daughter - never has there been a finer specimen of humanity etc etc. Anyway, MS nurse fought a valiant fight on ED's behalf and, even in these cutting times, managed to get funding to one of the few places that cater for younger people, with a huge list of activities, therapautic stuff, doctors, physio blah blah lovely building - on paper and from photos, it's just how you'd make it if you could choose - there's even a flat for visitors to stay in, and with the vehicle from the fund-raising she could go home at weekends. So it has to be done - it may be the turning point in a return to life for her, being in a stimulating environment, making friends, having someone there to find and dial the number when she wants to make a call - huge grounds, all wheelchair accessible.

But I am heart-broken. I don't mean a bit, I mean totally undone, apart from when I am reciting the benefits - maybe that's the way through, to keep my mind fixated on that. But I want to scream NOOOOOOO! and howl and tear myself apart - that's my daughter, we will do it, we can give her a good life, we love her, for you it's just a fucking job, she should be with us. But we can't do it, can we? Everything I come up with is just tinkering round the edges, or it's a bloody pipedream - SIL can't give up work to look after her without them all becoming seriously poor, which is bad enough in a city - in a rural area it'll have you feeling trapped and hopeless in no time. I do what I can (which is pretty fucking good at its best - you saw me in the video - look what I can be like in short bursts!), but the truth is I'm flaky as fuck. I crash for days after every visit, and I'm only there for a few days at a time. The build up to the walk was excruciating, both for me and those around me, as I escalated into a twitchy, pacing, smoking, questioning, endlessly questioning hurricane of anxiety and incapacity.

SIL feels the same pain at the thought of residential care (differently, being her partner - a huge loss for him, as it has been incrementally for these last two years, but this is my blog so it gets to be about me) - we have cried at each other on the phone - but we both know the answer. So we are going to look at the place on Sunday, which means back on the fucking M25 and back on the fucking airbed and smoking outside and not knowing what to expect and not wanting anything other than my girl back, talking bollocks at 90 miles an hour, organising the shit out of all of us, being the one buzzing up and down the motorway, coming to see me and just being herself, the person she should be, living her life.

I also need some support, so any anything positive from anyone would be greatly appreciated - after years of almost always getting comments and/or notes I seem to have fallen into a black hole of silence and it's lonely. I know there's no magic words to make it better but a cyber hug from a cyber friend is worth a lot.

Hideous. Better put Beethoven in again here:

11:12 p.m. - 17.10.13


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